Below is a slightly shortened version of a letter to the U.S. Department of Health & Human Services and the Centers for Medicare and Medicaid Services from VOR.
April 5, 2017
Dear Secretary Price and Administrator Verma:
…[VOR's] membership is made up of family members and guardians of individuals with I/DD who access multiple forms of disability services under Medicaid such as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID), Home & Community Based Services (HCBS) group homes and intentional communities, sheltered workshops and facility-based day programs. Through the provision of a wide-range of services, we as a society hold true to the principles of the Americans with Disabilities Act (ADA) and the U.S. Supreme Court Olmstead decision which make the needs and choices of individuals paramount in the design of public accommodations for people with disabilities.
Your letter to Governors addresses new CMS regulations connected to HCBS settings….
There is a great deal of controversy surrounding these regulations and the degree to which they limit the rights of individuals with I/DD to make their own choices about where to live, work and with whom to associate, especially if the choice is a disability-specific HCBS intentional community or work setting. No other group of American citizens faces such restrictions on their personal autonomy. We hope you take the comments and concerns of constituents into account as you ensure CMS rules respect disability law and individual rights.
Dear Secretary Price and Administrator Verma:
…[VOR's] membership is made up of family members and guardians of individuals with I/DD who access multiple forms of disability services under Medicaid such as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID), Home & Community Based Services (HCBS) group homes and intentional communities, sheltered workshops and facility-based day programs. Through the provision of a wide-range of services, we as a society hold true to the principles of the Americans with Disabilities Act (ADA) and the U.S. Supreme Court Olmstead decision which make the needs and choices of individuals paramount in the design of public accommodations for people with disabilities.
…[We] urge you to remember the people we serve as you craft policy, namely individuals with intellectual disabilities, many of whom have severe and profound intellectual and physical handicaps accompanied by complex medical and/or behavioral conditions.
A significant number of the individuals we serve choose and require the life-sustaining care only possible in large congregate care settings such as ICF/IID homes. The ability to efficiently share expert staff such as licensed nurses, therapists and direct care professionals and to provide a central location for medical specialists and dentists to hold clinics, allow individuals in these settings to receive the care they need in the most effective way to the taxpayer. Breaking up these settings is akin to tearing apart the Intensive Care Units of hospitals and spreading out fragile patients inefficiently across a community. It just wouldn’t be done if high quality, compassionate care at the most reasonable cost is the goal.
Opponents of ICFs/IID homes, unable to argue against these obvious merits, attack ICF/IID homes by stigmatizing them as “segregating.” …A large ICF/IID setting has the training and resources, both manpower and transportation, to ensure regular community outings for this level of need. … That’s why for some individuals, an ICF/IID home offers the greatest opportunity for integration into the community.
The U.S. Supreme Court understood these concerns and foresaw the possibility of a campaign to force all individuals into community settings regardless of individual need and choice. The Court was compelled, therefore, to strongly re-affirm the importance of institutional care:
A significant number of the individuals we serve choose and require the life-sustaining care only possible in large congregate care settings such as ICF/IID homes. The ability to efficiently share expert staff such as licensed nurses, therapists and direct care professionals and to provide a central location for medical specialists and dentists to hold clinics, allow individuals in these settings to receive the care they need in the most effective way to the taxpayer. Breaking up these settings is akin to tearing apart the Intensive Care Units of hospitals and spreading out fragile patients inefficiently across a community. It just wouldn’t be done if high quality, compassionate care at the most reasonable cost is the goal.
Opponents of ICFs/IID homes, unable to argue against these obvious merits, attack ICF/IID homes by stigmatizing them as “segregating.” …A large ICF/IID setting has the training and resources, both manpower and transportation, to ensure regular community outings for this level of need. … That’s why for some individuals, an ICF/IID home offers the greatest opportunity for integration into the community.
The U.S. Supreme Court understood these concerns and foresaw the possibility of a campaign to force all individuals into community settings regardless of individual need and choice. The Court was compelled, therefore, to strongly re-affirm the importance of institutional care:
“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Olmstead v L.C. 527 U.S. 581, 601-02 (1999)
Your letter to Governors addresses new CMS regulations connected to HCBS settings….
There is a great deal of controversy surrounding these regulations and the degree to which they limit the rights of individuals with I/DD to make their own choices about where to live, work and with whom to associate, especially if the choice is a disability-specific HCBS intentional community or work setting. No other group of American citizens faces such restrictions on their personal autonomy. We hope you take the comments and concerns of constituents into account as you ensure CMS rules respect disability law and individual rights.
While ICF/IID homes are not regulated by the new CMS rules for HCBS settings, they are affected by them. These new regulations marginalize fragile ICF/IID residents by labeling their homes as “isolating,” and prohibiting HCBS residential and work settings to be operated on or adjacent to ICF/IID campuses. The hypocrisy inherent in such policy should be evident to all – we are going to label ICF/IID homes as isolating while we isolate them.
And who does such policy isolate and marginalize? It marginalizes individuals with severe and profound intellectual disabilities, severe maladaptive behaviors, autism, quadriplegia, epilepsy, non-verbal, tube-fed, many with tracheotomies and dependent upon ventilators, to name only a few conditions common among residents of ICF/IID homes…
We urge you to keep the needs and rights of individuals choosing large congregate care settings such as ICF/IID homes, HCBS intentional communities, sheltered workshops and facility-based day programs, in your mind and heart as you continue Medicaid’s commitment to the most vulnerable citizens of our society. Please remember the people for whom Medicaid was first intended. Their voice may be small in terms of decibels and votes, but the fortitude and goodness with which they lead their lives is boundless. We can all learn a great deal from them and we have a duty to protect them.
Sincerely,
Caroline A. Lahrmann, VOR President
CC: Nation’s Governors
CC: Nation’s Governors
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Read the full text of the letter here...
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